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#1 scuba

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Posted 17 September 2014 - 04:49 PM

I had my latest 3 month blood draw yesterday at M.D. Anderson. I still get amazed at how much a factory the fast track lab is like. I was in and out in 10 minutes. 

 

My CBC came back the same as my last CBC three months ago and the one before that and the one before that,  except this time I did have a slight increase in RBC's and Neutrophils. Neutrophils were actually "normal", but barely so. RBC's continue to be 25% below the minimum threshold and I feel it when I go for my routine runs and sprints. Platelets don't seem to budge.

 

I won't know the latest PCR result until next week and I half expect that it will be the same as 3 months ago as well. I am getting these results on 20 mg Sprycel and 8 grams Curcumin. I just began to experiment with a new Curcumin, however to see if I can take fewer Curcumin tablets.

 

After I get my PCR test results back, I am going to try and stop Sprycel for six weeks. This will be a personal test of mine since there is no way my doctor would support my decision. I am going to just do it and then report the results. What I am going to do is wait six weeks from now while continuing to take my Sprycel dose and then six weeks prior to my next test - I'll stop taking Sprycel. Over the remaining six weeks prior to the test I will be TKI FREE. I am very curious if my PCR changes, if my CBC changes, if I feel even better than I do now.

 

If PCR goes up - by how much? if it doesn't go up - then I am going to stay off Sprycel for the next 3 months. And then test again. If it does go up significantly, I'll double up my dose during the next six weeks. 

 

I don't fear CML anymore - haven't for a very long time. It is a slow disease when in the Chronic MMR phase. I expect that I will have time to re-start Sprycel if I get a one log increase in PCR and it will bring me back down to where I was before.

 

I'll know next week what I am going to do. It's time for the experiment.

 

(p.s. This new forum format does not send me email like the old one did when replies occur - I'll have to remember to check back for updates.)


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#2 gerry

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Posted 17 September 2014 - 06:24 PM

Good luck with your experiment.



#3 elvis

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Posted 17 September 2014 - 07:36 PM

what brand of curcumin do you take? I am looking for brand names that is pure, unadulterated and the dosage is as per the claims.

 

Not sure which brand to buy. Any help is appreciated.



#4 scuba

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Posted 17 September 2014 - 07:49 PM

what brand of curcumin do you take? I am looking for brand names that is pure, unadulterated and the dosage is as per the claims.

 

Not sure which brand to buy. Any help is appreciated.

 

 

I can't recommend a brand. I will tell you what I take:

 

Physician Naturals C3 Curcumin 1000 mg w/ Bioperine (manufactured by Sabinsa) and used in M.D. Anderson trials.

 

I take a full 8 grams per day most days. My PCR's have been 0.01%. When I have cut back on Curucmin in the past, my PCR's went up. It's not scientific, just 100% correlated in my own experience. 

 

I am experimenting with Longvida Curcumin recently to see if their claim of higher bioavailability will make a difference. I added it to my Curcumin regimen and lowered my C3 Curcumin by the same amount.

 

Roll the dice. That's CML. We're blessed to have TKI's. Go on / go off  - experiment. We can do it.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#5 Marnie

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Posted 17 September 2014 - 07:58 PM

Hey, Scuba. . I've been off Sprycel for 6 weeks and just had PCR test yesterday.  I'll let you know the results next week.

 

Marnie



#6 JPD

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Posted 17 September 2014 - 08:05 PM

I just googled Curcumin - so I wont ask what it is - but why's it supposed to be good?  Helps uptake the TKIs?


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#7 scuba

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Posted 17 September 2014 - 08:57 PM

Hey, Scuba. . I've been off Sprycel for 6 weeks and just had PCR test yesterday.  I'll let you know the results next week.

 

Marnie

Hi Marnie,

 

Please let me know your results! I am eager to get off the drug and see if we can hold our own without it.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#8 scuba

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Posted 17 September 2014 - 09:01 PM

I just googled Curcumin - so I wont ask what it is - but why's it supposed to be good?  Helps uptake the TKIs?

 

There are a lot of threads on Curcumin in this forum. Essentially Curcumin is a down regulator of the genes that control CML growth. It's not a cure - just an antagonist. It augments the effect of Sprycel (documented). I have been taking Curcumin for years now. And have been able to maintain MMR with very little Sprycel. I suspect Curcumin is the reason.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#9 pamsouth

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Posted 17 September 2014 - 10:11 PM

You said

>"This will be a personal test of mine since there is no way my doctor would support my decision. I am going to just do it and then report the results."<

 

How will your doctor feel about that?  Will he still see you, will he be angry? Will he write in your medical journal that you are a non-compliant patent?  

 

I am alway in fear of how much to push my oncologist or any doctor, as I hear people say, if you are non-compliant your oncologist or doctor will not see you.  A few years ago a previous oncologist had me mixed up with another patient.  The receptionist called and said if I didn't do what the onc had told me, they would not see me, and I had seen her ever quarter, labs every quarter and chest x-rays like she had requested, wrong patient.

 

  I pressure my current oncologist a year ago, to lower my dose of Gleevec to 300mg a day, and yes my leukemia count went up and he is not happy, but I have remained on 300mg, against he wishes. In fact pharmacy had said there was a dose change and I said no, and somehow they fixed it to continue the 300mg.   I fear when I go back to oncologist, that he will not want to see me, unless I increase dosage or change drugs, of which I intend to do neither!!  I am 66 years old and have stage 3 kidney GFR, sever back pain, and get tired easily.  I do exercise and we have just started sq dance lessons, but it takes everything out of me, and my muscles - joints, ache horribly, but I keep going.  I do not want to push the kidney's or side effects, with so high dosage or combination of many drugs.  I'v been on Gleevec since 2005. At this age I'm looking more at my quality of life, without so many long term side effects.

So I only take the 300mg Gleevec, a blood pressure tablet and lasix. I'm thinking of taking the fish oil and maybe 1000mg of Curcumin, as I think if I take to much curcum with Gleevec, it could cause a bleed.  On 400 mg Gleevec it gives me eye bleeds and red skin streaks and a red mask face with puffy eyes and bad co-ordination, with foggy brain.   300mg Gleevec takes away some of the inflammation, eye bleeds, etc.   But I hear Sprycel standard dose of 100mg for people over age 65 years has a great risk of PE.  I tried Sprycel once, for a few days, at 50 mg and it was terrible, terrible, so I would rather not jump around.  

 

PamS


PamSouth


#10 JPD

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Posted 17 September 2014 - 10:38 PM

There are a lot of threads on Curcumin in this forum. Essentially Curcumin is a down regulator of the genes that control CML growth. It's not a cure - just an antagonist. It augments the effect of Sprycel (documented). I have been taking Curcumin for years now. And have been able to maintain MMR with very little Sprycel. I suspect Curcumin is the reason.

So everyone with CML could benefit from taking this?  Im already down with the whole lemon-juice with the pills thing, so whats one more thing.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#11 elvis

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Posted 17 September 2014 - 10:40 PM

Does Curcumin with Sprycel 100mg increase chances of bleeding? I am planning to start it based on these threads just double checking.

 

Also is there a time when I should take it. Should it be taken along with sprycel or few hours before or after that.

 

Any best practice.

 

Sorry for too many questions.  Just curious on what I should follow.



#12 scuba

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Posted 18 September 2014 - 04:15 AM

My Oncologist absolutely does not recommend I stop taking my low dose Sprycel. He said that if I achieve undetectable for two years he would sanction the test.  I would probably be put on a protocol of six week testing at that point to verify.

 

It will be my decision though. My curiosity is too high at this point. But it does depend on what my latest PCR test result returns. I have never been undetectable. 

 

Regarding Curcumin - I take 8 grams a day spread throughout the day. Eight grams is the minimum amount suggested by Dr. Aggarwal at M.D. Anderson so I follow his recommendation. I have no blood thinning issues whatsoever and my Platelets are on the low "normal" level. I do get plenty of vitamin K2 by eating Natto (an acquired taste). K2 facilitates clotting. I don't bruise easily. Personally - I think of Curcumin the way people think of aspirin for heart health. My father died of a Stroke - so perhaps the Curcumin's "thinning" is a good thing for me.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#13 pammartin

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Posted 18 September 2014 - 07:40 AM

Scuba,

 

Best of luck with your experiment. I have been off Sprycel since mid-May and remained undetectable in July, (oncologist approved because of PH).  I am going back next week for labs then in two weeks for a BCR/ABL, and admit even with the PH I have enjoyed life without the side effects of Sprycel.  From the beginning and diagnosis I have been told taking the TKI is necessary and without it the CML will return.  I do not advocate anyone to stop taking their medication unless needed, but I admit I am currently facing an interesting choice.

 

Pam



#14 scuba

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Posted 18 September 2014 - 08:11 AM

Scuba,

 

Best of luck with your experiment. I have been off Sprycel since mid-May and remained undetectable in July, (oncologist approved because of PH).  I am going back next week for labs then in two weeks for a BCR/ABL, and admit even with the PH I have enjoyed life without the side effects of Sprycel.  From the beginning and diagnosis I have been told taking the TKI is necessary and without it the CML will return.  I do not advocate anyone to stop taking their medication unless needed, but I admit I am currently facing an interesting choice.

 

Pam

 

My hope is that my PCR will remain either unchanged or drop. If it goes up, I'll have to re-start Sprycel again. My expectation is that my red blood cell count will return to normal range so I can exercise harder. RBC at last test was 3.7 and has been at that level for years now. Most people have RBC's around 5.0. I feel the anemia. The little dose of Sprycel I take has a very strong myelosuppressive effect on my bone marrow. I had thought that exercise alone (intense sprinting) would cause my RBC's to go up. Nothing. My heart rate, lung capacity and general fitness have improved (including weight loss back to college days), but RBC's are rock steady at 3.5-3.7).  


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#15 Trey

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Posted 18 September 2014 - 02:36 PM

I have been a curcumin skeptic, and remain so.  I have tried to be objective and see if it has clearly helped any patient, and although there are many variables, I just don't see the benefits.  It does inhibit certain cell functions, but those functions are necessary for non-leukemic cell function.  It also is a blood thinner, and since many CML patients have lower platelets and possibly "slippery" platelets, curcumin is not a good idea for many CML patients.  Scuba (Michael) has been the biggest proponent, and that is fine, and it is also good to watch some people try new approaches, but I just don't see the evidence that it clearly helps CML patients.  It is also expensive in the better uptake brands.  So overall I remain doubtful about it, but I am not anti-curcumin if people understand the risk factors.  Everyone can make their own decision, but I am not on board this bandwagon. 

 

Here is one of many previous discussions we have had about this:

http://community.lls...100-rethinking-curcumin/?hl=curcumin#entry139231



#16 scuba

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Posted 18 September 2014 - 05:06 PM

I have been a curcumin skeptic, and remain so.  I have tried to be objective and see if it has clearly helped any patient, and although there are many variables, I just don't see the benefits.  It does inhibit certain cell functions, but those functions are necessary for non-leukemic cell function.  It also is a blood thinner, and since many CML patients have lower platelets and possibly "slippery" platelets, curcumin is not a good idea for many CML patients.  Scuba (Michael) has been the biggest proponent, and that is fine, and it is also good to watch some people try new approaches, but I just don't see the evidence that it clearly helps CML patients.  It is also expensive in the better uptake brands.  So overall I remain doubtful about it, but I am not anti-curcumin if people understand the risk factors.  Everyone can make their own decision, but I am not on board this bandwagon. 

 

Here is one of many previous discussions we have had about this:

http://community.lls...100-rethinking-curcumin/?hl=curcumin#entry139231

 

My father had quadruple heart bypass and ultimately died of a Stroke a few years later. My older brother just had a stent put into his coronary artery so he's on his way just like my father. My family has a history of this. I decided to modify my diet significantly (plant based) and to focus on the factors that lead to heart attacks and strokes - namely blood clots. So far my arteries are clear, but diet and exercise is the reason. 

 

Curcumin has blood thinning properties similar to Aspirin without the stomach upset. I view Curcumin as another tool to keep my blood free flowing and help minimize the chances of a heart attack or stroke due to clots as well as a down regulator for rapid cell growth typical in CML.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"





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